You don’t always have to be thankful that it isn’t worse – Chronic Illness Challenge, Day 29. 

What helps you to cope with the stress of this lifestyle? 

Today is going to be another shot and sweet entry I’m afraid. I woke up 5am with a temp of over 40 so I’m feeling pretty rubbish. 

Anyway to answer the question a few things:

  • Writing EVERYTHING down. Brain fog means I forget easily and then anxiety means I worry about what I’ve forgotten. So I write everything I need to remember (or even may need to remember) down. What ever time of the day (or night) it might be). 
  • Budgeting. One of my biggest anxiety trigger is money, it would be a billion times worse if I didn’t keep such a close eye on what I’m spending. I know what comes out when, what needs to go where, what needs to be saved as emergency money and what needs to be kept back in case Wildchild needs anything. My budget is written down so I can remind myself when I’m having a bad brain fog time and if I still can’t think through it I can show it to someone else. 
  • Understanding support system. Being able to open up and really talk honestly to someone about how you’re feeling can be incredibly helpful. The majority (not all but most) of my support network are online. They  are reliable, honest people who may or may not have an understanding chronic Illness but are always, ALWAYS, there to listen when I need an ear. They will be honest with me and give me good advice. 
  • Being honest with myself. I now firmly believe that feel guilty for having days where you are sick of your conditions, depressed and just want to be normal is entirely counterproductive. I am NOT normal, I HATE being in pain, I HATE having so many physical limitations, I HATE being stuck in the house, I HATE my chronic collection and it DOES totally suck sometimes. Sometimes I am NOT okay and that IS okay! Sometimes I need to let myself be upset, I need to let myself grieve so that the next day (or the day after) I can get up (metaphorically speaking) dust myself off and get on with getting on. 
  • Focusing on what YOU can do NOT what you can’t. 
  • My family. Especially WildChild. 

Sorry it’s so short. I just can’t manage anymore today. I hope it makes sense! 😘

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Take that chronic collection! – Chronic Illness Challenge, Day 28 

Name five things you have achieved despite being ill.

Okay, here goes in reverse order:

5) I still got my degree in Midwifery. Granted I cannot practice as I don’t have a PIN number but I am so happy that I managed to get to the end of the degree. Perhaps one day they will find a cure, and it’ll never be too late for me to try again.

4) Move out. – When I first got sick I thought that leaving my childhood home would be impossible. Thankfully I was wrong!

3) I have job. Okay so it took me a decade to find one that I could manage, it had to be basically written around me and it’s only for 3 years but I am useful to society again. I can help people and I can use my experiences to do so, and that, that almost makes everything worth it.

2) Getting Married – I didn’t think I would when I started to get ill. I kept informing Chris that I was a burden and that he was missing out on being young because of me. Just because I was sick and didn’t get to go out or have fun didn’t mean he shouldn’t. I told him to leave me multiple times, I think I even begged him to once. He knew I was asking him because it was better for him and he didn’t exactly agree with me. I’m glad he didn’t! We got married in 2008 and I even managed to walk down the isle! With my actual legs.

1) Becoming a Mum. This is something I honestly, totally, completely and utterly viewed as an impossibility. Not only was I told that I would be unable to get pregnant on the extensive meds I was on, but I was convinced my body could not hold on to a pregnancy, but Wildchild had other ideas! Probably a good thing as I would NEVER be without her, she is my reason to fight, to carry on. Okay so pregnancy wasn’t easy, my GAD made an appearance for the first time (don’t get me wrong I would rather it would be bad in pregnancy than bad when I’m not pregnant), I was hospitalised, I bled a lot at 34 weeks and was gestational diabetic. But I would do it all again in a heartbeat just to have her. Will I have any other children, I won’t rule it out, but I doubt I’ll ever be fully capable of making an actual decision to do so. As far as I’m concerned I am beyond lucky to have Wildchild and I’m so happy!

There’s always something to be thankful for – Chronic Illness Challenge, Day 27

What is the best advice you have received? 

The world is full of people wanting to give “advice” to chronically sick people. Often this is not particularly useful or even realistic advice. Here are some bits of not useful advice that I’ve been given over the years: 

  • Maybe if you slept more. (I could sleep all the time and I wouldn’t be any less exhausted). 
  • Maybe if you had a job. (I have got a job). 
  • What if you got out more? (Going out makes me worse not better).
  • Are you sure you’re not getting older? (I’ve been ill since 16, most 16 year olds don’t feel like a 90 year old). 
  • If you’d get more exercise? (Seriously? Heard of PET?)
  • Are you sure it’s not just in your head? (Yes I am sure. Don’t even start me in that one!). 
  • Are you sure you’re not depressed? (It is not in my head. Yes I’m depressed but you would be too if you were in my situation). 
  • Remember there are people worse off than you. (Yes, I am very aware of that and very grateful, trust me, it’s what keeps me going on my bad days. BUT there are also many people better off than me and I am allowed to have my bad days and that is okay!). 
  • Have you ever considered just toughing it out and pushing through it? (*sarcasm alert* nope, never, not once did that thought occur to me, it’s not like I worked my way into a wheelchair and then into my bed for 18 months, oh…. wait…). 
  • My cousin/wife/aunt/best friends dog had that Illness and she had (insert ridiculous, expensive, unproven treatment here) and she’s fine now. (Good for you for you cousin/wife/aunt/best friends dog, I am so glad she is recovered. Have you studied that ridiculous/expensive/unproven treatment, do you know how it works? Is it backed up by peer review? How badly did they have my Illness because I know that the chances of me recovering at my previous severity are slim to none. *shocked look* okay then, shall we move on?).
  • Have you tried having a more positive attitude? (I have got a positive attitude. It’s something I cling to, something I try my best to hold on to to get me through). 

The best advice I have received have been from other sufferers.

  • Trust your body, believe your body, fight your corner and stay strong. 
  • It’s okay to have bad days, everyone does, just don’t let them rule you.
  • Look for the positives because even in the darkest times there are always things to be thankful for.
  • Learn to pace yourself!!! Only ever do 80% of what you think you can do, that way you’ll never over do it. 
  • Don’t look at equipment as “giving in” or “giving up” they are often the ticket to freedom. 

THAT right there is REAL advice, that shows understanding and is actually helpful in the life of a chronically ill person. 

And in honour of world book day, have a very fitting Harry Potter quote. 

In Sickness and in Health – Chronic Illness Challenge, Day 26

What impact has this had on your friends, family, partner, parents etc. 

Wow. Yeah. My Illness has had a huge impact on those around me. Mainly those closest to me, namely my husband, daughter, parents and sister. My friends have been affected by it but not as dramatically and not as often. 

My husband and I had been together for 6 months prior to me becoming seriously ill. He ended up working part time and moving in with me and my dad to care for me during the day. His job choices have always been dependant upon my health, he cannot work outside of the town we live in because he needs to be able to get to me quickly and he doesn’t drive. He has had to have unpaid leave when I was very unwell and unable to look after Wildchild as I am classed as a dependent. He has had to feed me, bath me and carry me to the toilet. He has looked after me in hospital and out. He has accompanied me to endless doctors appointment, made a ridiculous amount of phone calls on my behalf and fought my corner every step of the way. He has pulled me off the emotional floor and totally held me together when I needed it. He has cuddled me for hours when I could and not touched me at all when I couldn’t. He has picked up so many prescriptions, sorted and dispensed all my medications. He has translated my backwards messed up sentences. He knows before I do when I am about to enter the land of “you’ve totally overdone it” but also understands my want to occasionally pretend to be normal (whether or not he agrees with it is another discussion entirely). I could go on forever he does so much for me, including making sure that I eat and being my personal chef. I don’t think I thank him nearly enough. But I do love and appreciate everything he does and, although I hope to God never to have to repay the level of kindness he has provided me with, if I can I will in a heartbeat. 

My parents. When I first got really sick I was living with my dad, it was just him and me. He has always had my back (and I hope that he knows I always have his). He has always been my rock, my safe place, my home. Throughout my childhood anxiety he was the only one who understood, the one I could turn to and, at one point, literally the only person in the entire world who could get me out of a panic attack.  He has been behind me every step of the way, he has sat in surgeries with me arguing with doctors. He has fought against the benefits system with me and both won and lost. He has paid for me, budgeted with me and helped me to stand financially on my own feet. He has been my taxi, my hospital appointment companion and most importantly my friend. He has sat up a night watching me to make sure I am still breathing and doubtlessly he has worried about me every second of every day. Once again I could carry on forever about how much he does for me and how much I appreciate it. I hope he knows how awesome he is, how thankful I am and how much I love him. 

My mum and sister are wonderfully helpful and supportive, I think that sometimes it harder for them to understand as they have not both been around since the very beginning and haven’t been hit by the same chronic Illness bus as my dad and husband have. They help me however they can, mum makes me food and my sister takes me places they both look after Wildchild and take her to do fun things that I’m not able to do with her. 

Finally, Wildchild. Some people might say that she is the least affected as she has never known any different. Whilst it is true that she has only ever known what it’s like to have a chronically ill mother, no a healthy one, she is also the closest person to me. She relies on me and is dependant upon me. There are things that she cannot do that she would like to because I am sick. There things she knows how to do and things she has to do that most other children don’t because I am sick. She has to put up with people looking at me, asking questions sometimes being rude. She cannot have me do all the fun things with her that we would love to be able to together. She brings me love, laughter and snuggles everyday. She tells me she doesn’t care that I’m sick, that she would still choose me as her mum against all the healthy people in the world. It does affect her but she takes it all in her stride, we find our own ways around everything and we have a wonderful happy time together. She keeps me going and I love her. 

The Positives from the Negatives – Chronic Illness Challenge, Day 25.

Name 5 activities you have managed to pursue while being ill and 5 that you would not have considered had you not been.

I’m taking activities to mean literally anything I am physically capable of doing so here goes.

  1. Crochet – I LOVE to crochet. I had never picked up a hook until about 5 years ago. It is so relaxing. It’s something I am capable of doing, that I can watch grow, turn into projects and presents. It takes concentration and focus when learning but once you know what you are doing it’s easy and repetitive, it calms my mind and my anxiety. I may be a little addicted to it in fact.
  2. Knitting – I tried knitting, I am NOT good at knitting. I can do the basics, but I suck at following patterns and I get confused and frustrated, plus, the work grows so much more slowly than in crochet. So yes, knitting is another activity I can technically do, although I choose not to!
  3. Writing – I used to write poetry when I was younger as a way of dealing with depression and anxiety, I suppose I still could but it seems to required just a little too much concentration. So I write things like this blog and my general thoughts and ramblings to get them out of my head. It’s something I can still do even though I’m sick, granted I write less than I would like to, it never happens all in one go and I can only record short sections at a time but I CAN do it!
  4. Audiobooks – I have always loved to read, loosing myself in a fantasy world, getting out of my real world I suppose. As I got more and more sick and my cognitive function became more and more impaired I had to find another way to loose myself in those worlds.
  5. Documentaries – I always enjoyed learning, about pretty much anything actually. I have two degrees and would do multiple online free courses. When this was no longer possible I took to watching documentaries on TV when I was well enough to stand to watch TV, or setting them up on youtube and simply listening to them. It allows me to keep learning but without the level of energy expense and commitment.

Okay, so now for the activities I would not have done had I not been sick. I don’t know for sure but let’s try it.

  1. Sewing – I have recently started sewing small amounts when I am well enough. I couldn’t tell you for sure whether or not I would have taken up this hobby without my chronic collection but what I can say is that it has been my symptoms that have encouraged me to. I have skin sensitivity and I find it very hard to find clothes to wear that are bearable or, heaven forbid, comfortable. This led me to the conclusion that if I could learn to make my own I could play around with them, adjust them and eventually make my own comfy clothing. My parents even got me a overlocker as a delayed 30th birthday present (I’m 32 now but haven’t been well enough to celebrate my 30th so this was a good use off the money) to make it easier, which it does now  have got the hang of threading it!
  2. Crochet – As I said before it is now one of my favourite things to do, but I doubt I would have even considered taking up the hobby if I wasn’t so sick. If my hobby didn’t have to be able to be performed in a sitting or semi-sitting position.
  3. Babywearing – Once again, not something I am 100% sure that I wouldn’t have done even without my illnesses but the reason I started babywearing with Wildchild was because I needed to be able to push myself and look after her. I love babywearing it was such an amazing experience and something that I am so happy I got to share with Wildchild. So much so that I went on to become a babywearing peer supporter and then, a couple of years later a babywearing consultant. Although I don’t practice as a babywearing consultant because the insurance is too expensive without be being able to commit a certain amount of hours it is brilliant to have both the knowledge and the qualification and it really helps with the next point on this list!
  4. Internet Admin – Once again I may have volunteered to put myself in these positions without having become chronically ill, but those groups I admin are babywearing groups. Babywearing groups that I believe I would not have been involved with had I not taking up babywearing because of my disabilities. So yes, I am part of a couple of admin teams that admin multiple large babywearing groups on facebook. Being a qualified babywearing consultant helps me to give advice that is safe and in depth. My disabilities give me an added bonus of being able to directly understand how difficult babywearing can be with physical limitations allowing me to give extra advice from personal experience.
  5. My Job – If I wasn’t chronically ill I would most definitely have a job, but not this job. A different job, a better paying job probably, one with more hours and more responsibility. But I would not have THIS job, which I LOVE. Which I am so amazingly thankful for, every single day. The charity was inspired by people like me who have been stuck in seemingly hopeless situations, without a clear and obvious way out. Without me having gotten sick and ended up in these situations IG may not be around, it may not be helping the people that we are helping.

So who says chronic illness is all bad right?

This too shall pass – Chronic Illness Challenge, Day 23. 

What do you say to yourself when you need a pep talk? 

This isn’t hard to answer, not really. I am a big advocate of positive thinking, I doesn’t treat the disease itself and it definelty doesn’t cure it but it can make a big difference to your feelings and emotions surrounding it. At many times in my history with my chronic collection it would have been so easy to roll over in bed and accept “this is my life now” and give up trying, give up hoping, give up gaining ground. At my worst when I was bed bound for 18 month it would have been easier to do that, to think that that was my lot and just stay that way. 

I am not saying that positive thinking made me able to do things, totally not the case. Bed bound people are not simply a few positive thoughts away from a wheelchair, no, just no. But for me, about 10 months to a year into my stint in bed I decided that if there was anything I could do to make sure that I didn’t stay like this for ever then I was going to do it, and I was lucky because eventually (and yes it was about 8 months before I showed any progress) I began to move forward in the most tiny, most insignificant steps. May have been massively off putting or disappointing for someone else but more me, I chose to focus on them, cling to them, make them count. It was then that I found, positive thinking helped me. Not my physical conditions, thinking positively about having a leg when you are missing one isn’t going to make it grow back is it? But the mental side of my Illnesses are definitely boosted onto the good side by positive thinking. 

I’ve also learnt, over time, that it’s okay to have bad days, down days. It’s okay to cry, to scream, to sit in the dark and watch Netflix all day. That although I may have it much better than some people I also have it much worse than many more. So if I get tired of holding it together and I just need a break from “I’m okay” land it’s okay to take a day or two to simply being sad and acknowledging that my life isn’t what I thought it was going to be. To despise my health and my limitations. To grieve for the wife I wanted to be, the mother I wanted to be, the person I used to be. But that’s the point it is ONLY a day or two, then (thankfully, as I’m lucky) I can pull my shit together and go back into “I’m alright, I’m fine” mode, because I had a break. 

So yes, what do I say to myself when I need a pep talk? Well after I’ve judged where I am on the “coping” scale I decide if it’s time to let it go, if it is, I do, the positive pep talk stuff can wait a couple of days until I can stomach it. If I’m still well within range I look back to how I’ve been and how much better I am now than I used to be. I look at other people that are sicker than me but that manage so much better. I become thankful for how relatively good my life expectancy is in comparison with others. And, if all else falls, I simply repeat:

“This too shall pass”

Only Time will Tell  – Chronic Illness Challenge, Day 19.

How do you feel about the future? 

Well, that’s a tough and rather depressing question. Erm… yeah…. *deep breath* i’ll give it a try, here goes. 

When I look into the future, despite the positive attitude that I try and hold onto, to be honest it’s pretty bleak.

I spend my entire life fighting against the system, the medical system, the benefits system, the government. Most of the issues I face within these systems are caused by the government. My political views aside I will only talk about my experiences and what they mean to my family and our future.

Medical care. With the Illness that affects me the most being invisible, not easily diagnosed and untreatable it has literally always been a fight. ME has been recognised as a neurological condition since the 1960’s and has its own NICE guidelines within the NHS. Despite this there are STILL many medical professionals that do not believe in its exisitance, or believe that it is not medical condition and that it is psychological instead. This makes finding a correct diagnosis and any treatment an uphill fight, all the time. It took 3 years to be diagnosed from the time that I realised my symptoms where not disappearing or improving. Even now I still have a list of doctors who I will not see and one who has actually told me directly that she does not believe in the existence of ME. I STILL have doctors and other healthcare professionals recommending GET (graded exercise therapy) to me, which I previously tried and which caused a massive and rapid decline in my physical ability, it has since become apparent that it is not a suitable treatment for severely affected ME patients. 

However over time the medical profession has become increasingly understanding, there are still many, many disbelieving professionals out there but substantially less than when I first got sick. Hopefully this will continue for the future. 

Over the time that I have been unwell I have noticed so many problems and issues within the NHS and social care. There has been a rapid decline in available treatment and support in the past 6-7 years. It’s been worse lately, I believe this to be linked to the reduction in funding for councils, as they fall the level of social care available falls. As this drops the ability to discharge patients dependant upon home care from hospital becomes almost impossible, this bed blocks hospitals and puts staff and resources under incredible strain. It delays people from receiving necessary but elective treatment and operations, which can lead to worsening condition, further complications and require more extensive, costly treatment. The NHS is indeed in crisis, but it is a crisis of the governments making. I think most people would take a small tax increase to be able have easier access to better care. 

There’s always hope though, in Austrialia they are taking ME and research into its cause a lot more seriously. There have been studies finding causes and possible causes, hopefully this will eventually lead to a diagnostic test and treatment, and, in turn more recognition for sufferers from the medical profession. Hopefully the government will realise they’re mistakes or bow to public pressure and put money into councils and the NHS even if it does mean a slight tax increase. The NHS should be about people and not about profit, that is, afterall, why it was developed in the first place. We really do struggle financially but even we, who already find it hard to make ends meet would pay extra tax to know that our loved ones would be cared for. 

Speaking of our financial struggle, a lot of it is also caused by the benefits system. Both myself and Chris work. We are not (and will always try our best to remain this way) dependant open benefits. That said, due to my health my ability to work is serverly compromised, the job I have is also only temporary (3 years) as is Chris’s ability to work overtime due to my care needs. Thus we are viewed as a low income family. We get help to pay rent through housing benefit, although we pay the majority of it ourselves. Due to being low income we also receive tax credits. I am so, so grateful that we have a welfare system that is there to help us. It does keep us housed and out of poverty and that is amazing. The problems in the system are things like people falling through gaps in the system and that when there is any change to your income (even a possible change) benefits are stopped or suspended with little or no warning or explanation. This needs to stop. 

Our tax credits were recently reduced (without either warning or explanation) from £63 a week all the way down to £5 a week. This is an incredible drop, and we have yet to find out why. We use this money to pay our council tax and internet bill amoungust other things. We cannot plan, rebudget etc if we are unaware a change is going to take place. Also we don’t believe it to be correct and neither does the CAB. Our housing benefit is adjusted around it so that has changed also, although that has increased we are now worried about being overpayed by them, but still needing to use any extra to put towards bills. Along with the CAB we are slowly piecing together what on earth has happened, and why none of the figures (from either the HMRC or local council) add up within themselves, each other or relate in any way to the money we are receiving. The benefits system does need to change, to stop people falling through the net, to make sure everyone that needs help gets it. People need to be encouraged to work but people’s occasional inability to do so also needs to be recognised without as much of a fight. When benefits change we need to be forewarned and have correct explanations where the figures all add up right, not miles different in every letter, and different again in the amount we actually receive. So people are not left in the lurch, unable to afford to pay their rent, or essential bills, such as council tax. Since the change in my tax credits I have been almost unable to sleep, waking up mid-way through anxiety attacks due to worry about how on earth we are going to get through the week, never mind the month. Of course, this has a huge impact on my physical health and abilities leaving me less able to actively do anything about it. 

Positives on this is that we do have a welfare state. That we do have help, that we have a roof over our heads. That somehow we do, every month, find a way to make ends meet, however hard it is. Also that we have such loving friends and family, who would do anything to help us. My mum and dad help us to pay our rent and buy bits here and there for us when they need them. Chris’s parents help with Chris’s travel costs and are currently paying for him to learn to drive, which should give him more job opportunities. I also have some amazing friends, their support is invaluable, emotionally, mentally and some wonderful friends have even helped us financially, without us asking. Recently one friend sent me some money into my Paypal account, this has relieved a huge chunk of my anxiety as it allows me to pay our council tax bill this month, and gives us more time to sort out what on earth is going on. You know who you are, and, if you’re reading this we are so thankful and we all love you. 

So at the moment that is what my future looks like, at least it is all that I can see, because it has been what the last 6 years has been like, sometimes it’s harder to see further than what is right in front of you. 

I try hard not to think too much about the future, as no one knows what it will bring. Maybe my Illness will finally get the recognition and further research they need, maybe they will find a diagnostic test or a medical treatment that will help and show medical professionals it is a condition not a choice. Maybe the benefit system will become more stable and reliable, with advanced warning and explanation of changes. Hopefully one day we will get to the point where we will not need to receive any at all. Hopefully the government will increase funding for local councils and social care will become more effective, maybe this would allow Chris to do overtime and get promoted, dad to have to spend less time around me and get on with being retired and maybe, just maybe, it will save Wildchild from having to feel like she is caring for me. 

But all I can see is more of the same instability, more of the same fight and more of the same struggle in our future. So for now I’m going to focus on the here and now, each day as it comes. I’m going to look to my friends, my family and most importantly wild child and as long as we have each other, I know we can make it through.